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    Artificial saliva

    My excess saliva is now better managed, but a side effect is an extremely dry mouth at night. So uncomfortable that Iโ€™m getting woken up many times. I do have humility turned on on the BiPap ventilator.

    Any suggestions? I bought some Oralieve spray. Well rated, but not effective for me! Thanks.
    Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

    #2
    I love, xyilmelts but you probably know that. ๐Ÿ‘๐Ÿ‘๐ŸคŸ๐Ÿค—xx
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

    Comment


      #3
      Originally posted by PeterPan View Post
      So uncomfortable that Iโ€™m getting woken up many times. I do have humility turned on on the BiPap ventilator.
      Silly question Peter but have you tried turning up the humidifier?

      Any air leaks from mask? Which mask do you wear? Are you a mouth breather? xx
      โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
      Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

      โ€‹

      Comment


        #4
        matthew55
        Originally posted by matthew55 View Post
        I love, xyilmelts but you probably know that. ๐Ÿ‘๐Ÿ‘๐ŸคŸ๐Ÿค—xx
        I remembered you mentioning something but couldnโ€™t recall what itโ€™s called. Thanks!
        Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

        Comment


          #5
          Ellie
          Originally posted by Ellie View Post
          Silly question Peter but have you tried turning up the humidifier?

          Any air leaks from mask? Which mask do you wear? Are you a mouth breather? xx
          Thanks, not silly questions ๐Ÿ˜€. Humidifier is on 4 out of 5. Have a Res Med Airfit F30. Very neat, sits under the nose. Iโ€™m a nose breather - no way you can open your mouth with this mask. No major leaksโ€ฆ

          Xyilmelts on order as recommended by Matthew. Worth a try!

          Iโ€™m wondering if it is sensible to take Glycopyrronium in the late evening. I was told to space 3 doses out as equally as possible over 24 hours. I may experiment with that.
          Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

          Comment


            #6
            Glyco dries you up
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

            Comment


              #7
              Originally posted by matthew55 View Post
              Glyco dries you up
              I really appreciate it during the day, but not at night ๐Ÿคจ
              Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

              Comment


                #8
                Originally posted by PeterPan View Post
                Humidifier is on 4 out of 5. Have a Res Med Airfit F30. Very neat, sits under the nose.
                And 5 ?? My mask is the same type, so I get the 'no leaks' aspect.

                Originally posted by PeterPan View Post
                I was told to space 3 doses out as equally as possible over 24 hours.
                To be blunt, that's rubbish ๐Ÿ˜๐Ÿ™„ You shouldn't be stopped taking glyco when and how you need it - if you need to take a higher or lower dose at any time, you should be able to.

                I take my last dose at 5pm so, by the time I start on NIV, its efficacy has diminished. I take my glyco 2x per day. xx



                โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                โ€‹

                Comment


                  #9
                  Originally posted by Ellie View Post
                  And 5 ?
                  To be blunt, that's rubbish ๐Ÿ˜๐Ÿ™„
                  I love blunt ๐Ÿ˜€. Will do! (And will try 5)

                  Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

                  Comment


                    #10
                    matthew55 thanks for the recommendation of Xylimelts. A couple of issues getting them to stick, but slept for 6+ hours last night, which is a record!
                    Last edited by PeterPan; 27 January 2022, 11:23.
                    Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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                      #11
                      Same issues here my friend. They work during the day too.
                      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

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                        #12
                        Quick update. I was having a bit of trouble with the otherwise effective Xylimelts becoming detached and getting stuck in my throat.

                        Now using Oralieve Gel (not spray) at nights, which (for me) is even better. Longer lasting than Xylimelts, less goo in the mouth, and nothing to choke on. Recommended ๐Ÿ˜€
                        Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

                        Comment


                          #13
                          Well I have been using xyilmelts for longer and that has never happened to me.
                          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong ๐Ÿค—๐Ÿ˜˜๐Ÿค—๐Ÿ˜xx

                          Comment


                            #14
                            Originally posted by matthew55 View Post
                            Well I have been using xyilmelts for longer and that has never happened to me.
                            It may be a particular batch I was unlucky with. My first experience was better. Anyway, we are both happy ๐Ÿ˜ƒ
                            Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

                            Comment


                              #15
                              Originally posted by PeterPan View Post
                              I was having a bit of trouble with the otherwise effective Xylimelts becoming detached and getting stuck in my throat.
                              Gosh, that could have been dangerous Peter, happy to hear you found something which works xx
                              โ€‹Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                              Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                              โ€‹

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